Sunday, October 21, 2012

My first eight months of sickness were marked by a difficult emotional coping period. Looking back, I seemed to have turned a corner at around the nine month mark, when it suddenly became easier to cope with my new limitations. I reached a certain level of acceptance. I didn't realize it was happening at the time, but I can see it now, especially when I review my old blog posts.

One of the things that helped me turn the corner was that, for some unknown reason, I stopped thinking so much about the activities that I used to enjoy. First among those activities was surfing, but there are many, others, like jogging, drinking, yoga classes, snowboarding, and spontaneous road trips.

Well before I became sick, someone whose wisdom I value told me that "nothing in life is guaranteed." I keep coming back to that statement now whenever I'm tempting to dwell on thoughts of what I'm missing. I try to remember that health, and the freedom to pursue superfluous recreational activities isn't guaranteed. In fact, it's a privilege of a relatively small number of spoiled inhabitants of wealthy western countries.

Sometimes I take this thought process a step further and remember the extreme unlikeliness of my existence here, on this planet. There's an excellent quote on this topic from Bill Bryson's book, "A Short History of Nearly Everything."

Not only have you been lucky enough to be attached since time immemorial to a favored evolutionary line, but you have also been extremely- make that miraculously- fortunate in your personal ancestry. Consider the fact that for 3.8 billion years, a period of time older than the Earth's mountains and rivers and oceans, everyone of your forbears on both sides has been attractive enough to find a mate, healthy enough to reproduce, and sufficiently blessed by fate and circumstances to live long enough to do so. Not one of your pertinent ancestors was squashed, devoured, drowned, starved, stranded, stuck fast, untimely wounded, or otherwise deflected from its life quest of delivering a tiny charge of genetic material to the right partner at the right moment in order to perpetuate the only possible sequence of hereditary combinations that could result - eventually, astoundingly, and all too briefly- in you.

Not only that, but I find myself remembering that, for most of human history, the average life expectancy of most humans was less than thirty years. Even today, in many parts of the world, one can't reasonably expect to live past the age of 40. Of course, I realize that these figures are a bit skewed by high infant mortality rates. But the point is that, in at least one view of the cosmos, I'm living on borrowed time. Every ounce of enjoyment I can squeeze out of life from this point forward is pure gravy. It's bonus time.

Add to that the fact that, for most of human history and in many parts of the world today, life is/was often a full time exercise in survival. It's hard to imagine that quality of life was too good when we (humans) were foraging for each meal, dodging predators, and walking miles for clean water. Before modern medicine, a person was always one infected cut away from an untimely death. Basically, life has always carried with it a heavy amount of suffering just based on the cruelties of nature (not even counting all the suffering that man inflicts on man). This is why, I believe, that Buddhism grew out of the maxim that "life is suffering."

All this is to say that I'm trying to take life with ME/CFS in stride and put it into perspective. Many of my fellow PWME's are much worse off--sometimes homebound or even bedbound. I try to think of them when I'm tempted to sulk. Or I think of those with terminal diseases and remember how lucky I am despite the challenges of ME/CFS. Or I remember that, from a historical perspective, I'm on borrowed time and that everything from here on out is gravy.

Monday, October 15, 2012

Before I came down with ME/CFS, I caught colds or flus about once or twice a year. Now it's about once a month. I've seen the evidence in my natural killer cell numbers from blood tests: my immune system just isn't performing up to snuff.

Besides the obvious drawback--I get sick more--another unfortunate side effect is that I'm more aware of germs and the possibility of getting sick now. There was a time when I was mostly oblivious to the germ spreaders around me, but it seems that I notice them now. For instance, last week, at a restaurant, I heard a nearby cough and instinctively looked around. I then watched as a gentleman walked down the aisle between two rows of tables, coughing every few steps. He was essentially crop-dusting two rows of tables as he walked. Nobody seemed to notice but me.

I miss those days when I was oblivious to these such people. Maybe I was even one of those people.

When my wife and I vacationed in Tokyo, Japan, a few years ago, before I came down with ME/CFS, we noticed that every 8th or 10th person wore a surgical mask in public. At first we thought, "how depressing to live in a society where people are so germaphobic." But we came to discover that while some people wear masks to prevent themselves from getting sick, most wear them to prevent others from getting sick. This is a common courtesy in Japan. When one is sick, he/she wears a surgical mask in public to prevent others from getting sick.

I'm not suggesting that we should adopt this custom here in America. In fact, I could never see such a thing catching on. We Americans are far too vain, and probably too unconcerned with societal well-being. Japan is a much more collectivist culture. In American, we mostly look out for ourselves and, if others get sick, "oh well!" It would take a pandemic of some heretofore undiscovered deadly virus before Americans would ever embrace such a mask-wearing custom. Maybe that's a good thing.

In the end, I don't know what the "right" balance is between carefree living and germaphobia, but I believe that it lies somewhere between America's carefree crop-dusting lifestyle and the Japan's borderline mania. But now that my immune system is weaker than before, the Japanese way certainly doesn't look as crazy as it once did. People need to take responsibility for their own germs. Stay home. Cough into the crux of your arm (not your hand), and wash your hands if you're sick. But mostly just stay home.

Wednesday, October 10, 2012

I researched this issue about 10 months ago, and summarized my findings in this post. My conclusion at the time was that my chances of recovery were somewhere between 5% and 50%.

Recently I came across this new article that provides a little more hope for those, like myself, looking for good news. While the author doesn't reduce his findings to a percentage, he clearly believes that most PWMEs will "recover" in one sense or another. His sources and authorities seem sound.

I'm going to have to remember this article and return to it every so often. The problem is, while message boards are a great way to network with other patients and learn about new treatments, they also leave one with the impression that very few people are recovering. But, as my father-in-law (a scientist) pointed out, the ME/CFS message board crowd is a "self-selecting" group. The boards may not be the best places to get a sense of remission rates.

While the linked article certainly lifted my spirits, it also ends with a cautionary note about what is meant by "recovery."

"As I have already stated, a classic mistake people with CFS often make is to think recovery means "returning to how I was living before I got sick." The person will seek to recreate the conditions in which illness initially developed, and will of course relapse. Many are presented with this lesson repeatedly, until they shift their criteria for what "recovery" means. It is not desirable to return to "how it was before."

I would love to return to exactly how I was before, but I'm not expecting that. If I can just get to a point where I can do some mild exercise without crashing, and plan family trips without worrying about whether a crash will interfere, I will be happy.

Sunday, October 7, 2012

I apologize for the poor quality of the audio, which makes it sound like I have a lisp....the S's all sound drawn out and emphasized. I'm going to look into getting an external microphone to correct that issue.

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DISCLAIMER: I am not a doctor and have no medical training. Nothing in this blog should be construed as medical advice. This blog simply recounts my personal experiences and, at times, summarizes research from other sources. I can't verify the accuracy of these other sources. Never rely on anything you read here in making your own medical decisions. Always consult a doctor.

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What is Myalgic Encephalomyelitis (ME)?

The clinical definition of ME is complicated, and the symptoms are many. It is a "multi-system disorder" that affects a person's immune system, hormones, nervous system, and energy (at the cellular level). I prefer to explain, simply, that it feels like I have the flu. Every single day. This is an oversimplification, but it's often the best way to explain it to a healthy person.

About Me

I came down with ME in June, 2011. I was diagnosed six months later. This blog tracks my progress; my successes and failures along the path to (hopefully) sustained remission.
I live with my wife and two young daughters in Southern California.